Ay-yi-yi! I decided to write an entry today, but then couldn't figure out how to get to the place where you enter a new blog. I'm sure they didn't move it... I just couldn't remember. I just kept clicking on things until I found it. Kind of a scary way to start out.
If you read my blog from last week, you remember that I mentioned a gentleman who had come to the house to give us a bid on some painting and a couple tasks around the house that we could not handle. One of those was to install a second handrail on the stairs. When we were talking, he asked if it was okay if he could not get to it for six weeks or so. I told him that was completely acceptable since I had waited over six months to call him. When he was leaving, he said "Oh, I bet you would like that handrail up sooner?"
Well, he showed up this week, delivered the bid in person and prepared to install the rail. After it was installed, we asked him how much we owed him. His answer? "This is my gift to you. I know how important it is for your safety." I think he cut us a break on the price for the painting as well, since it was much less than what we considered reasonable and what we had paid the last time we had painting done. I have seen a lot of his work at the church where we both belong, so I know it will be quality work by a quality man.
Now, if I could quit changing my mind on what colors I want...
On a different subject... I belong to two different online support groups. The first is only for those with a confirmed diagnosis of FTD. It has been my saving grace many times. We help each other by sharing information we find but mostly, we support each other. We post our frustrations as well as the things that we do that you can't help but laugh at ourselves about. The second group is open to, not only those with FTD, but also their caregivers. This one often frustrates me because a lot of the caregivers get a little carried away, in my opinion, when venting about the loved one for whom they are caring. But, every once in a while, I am able to help someone by giving my input from the patient's perspective.
I was able to do that a couple times this week. Since I get so much from the group that is exclusively for those suffering from FTD, it was very satisfying to me to be able to help them. One was just common sense, I thought, but since their loved one was no longer able to communicate, it was something they had not thought of.
Of course there was yet another example of someone on the mixed group insisting I was fine since I was still able to communicate. This disease is fickle when it decides what to rob from each of us. I can communicate well, as long as it is typed, not so well when speaking. Writing by hand? Forget it, Many, many times, I can't remember how to make the letters. So, that's easy, I keep typing!!
Sunday, March 15, 2015
Sunday, March 8, 2015
Daily Frustrations
Yesterday, I broke down into tears and yelled that I don't want this damned disease anymore. Yes, I do realize there is no cure and that I can only keep doing as well as I can, but it wears me out... physically and emotionally.
I decided yesterday that I wanted to cook a real dinner. I decided on pork tenderloin with apple stuffing, baked potatoes and a vegetable. I am 62 years old and have probably made stuffing well over 200 times, how difficult is it? I just needed to chop up some celery, onion and an apple. Saute that till soft and add it to a few slice of bread cut up and add some seasoning. Easy-peasey... well, it used to be anyway.
I spent at least 10 minutes assembling the things that needed cut up. It took me another 10 to decide what cutting board and knife to use. Spent at least an hour cutting up the veges. Keep in mind, I was only making a small quantity of stuffing so there were no volume issues. I managed to cook these things without much trouble. Simple, as I said, melt some butter and saute till tender. I actually did it perfectly, until I grabbed the bottom of the skillet that I had just removed from the burner. That is when I lost it. After calming down and starting again. My husband asked what was wrong because I was just standing there staring at a cabinet. I had to tell him that I couldn't decide which pan to use. He started helping at that point, and the pork and stuffing turned out really well. Burned my hand again when I started taking the baked potatoes out of the over without a pot holder. I know my brain is degenerating, but you would think it would remember something as simple as "Don't touch the hot stuff, it hurts."
Today, I am afraid to cook dinner. It is already 4:00 in the afternoon and I cannot even decide what we should have, much less get up the courage to cook it. I am going to be in big trouble if the time comes when I can't cook anymore. My husband once called me when I was visiting my mother and asked me how to make instant oatmeal. True story!
Bottom line here, if you are with someone with FTD, pay attention to what they are doing and offer to help when see them start to struggle. You may have be sneaky to do this without them knowing, but you don't want them to accidentally hurt themselves. You want to keep encouraging them to do things, but pay attention to what they are doing.
There was another interesting thing that happened to me this week and I'm not quite sure how I feel about it, but it did frustrate me at the time. We had a gentleman come over to give us a price on doing some work in the house. I can't even paint a wall anymore. He is a wonderfully nice man, a member of my church, and came highly recommended. We were having a great time, a lot of laughing going on. Then he asked just what my brain issues were. I told him FTD, then started to explain it as is usually necessary. He said, I know exactly what you have, my sister had the same thing. Then it was like he couldn't get out of our house fast enough. I was confused. My husband asked if she "has" FTD or "had." He explained that she had already passed away from it. Then it clicked. I explained to him that other family members had experienced it and that we did indeed realize what the consequences would be. He relaxed then and continued talking. He even volunteered to come over sooner to install the stairway handrail within a few days, even though he couldn't start the other work for a few weeks. Yes, he did understand what I am going through. I am thinking the frustration came from once again realizing that this disease is a death sentence. Part of me felt relieved, though, that he didn't say "You seem fine, are you sure there is anything wrong with you?"
I decided yesterday that I wanted to cook a real dinner. I decided on pork tenderloin with apple stuffing, baked potatoes and a vegetable. I am 62 years old and have probably made stuffing well over 200 times, how difficult is it? I just needed to chop up some celery, onion and an apple. Saute that till soft and add it to a few slice of bread cut up and add some seasoning. Easy-peasey... well, it used to be anyway.
I spent at least 10 minutes assembling the things that needed cut up. It took me another 10 to decide what cutting board and knife to use. Spent at least an hour cutting up the veges. Keep in mind, I was only making a small quantity of stuffing so there were no volume issues. I managed to cook these things without much trouble. Simple, as I said, melt some butter and saute till tender. I actually did it perfectly, until I grabbed the bottom of the skillet that I had just removed from the burner. That is when I lost it. After calming down and starting again. My husband asked what was wrong because I was just standing there staring at a cabinet. I had to tell him that I couldn't decide which pan to use. He started helping at that point, and the pork and stuffing turned out really well. Burned my hand again when I started taking the baked potatoes out of the over without a pot holder. I know my brain is degenerating, but you would think it would remember something as simple as "Don't touch the hot stuff, it hurts."
Today, I am afraid to cook dinner. It is already 4:00 in the afternoon and I cannot even decide what we should have, much less get up the courage to cook it. I am going to be in big trouble if the time comes when I can't cook anymore. My husband once called me when I was visiting my mother and asked me how to make instant oatmeal. True story!
Bottom line here, if you are with someone with FTD, pay attention to what they are doing and offer to help when see them start to struggle. You may have be sneaky to do this without them knowing, but you don't want them to accidentally hurt themselves. You want to keep encouraging them to do things, but pay attention to what they are doing.
There was another interesting thing that happened to me this week and I'm not quite sure how I feel about it, but it did frustrate me at the time. We had a gentleman come over to give us a price on doing some work in the house. I can't even paint a wall anymore. He is a wonderfully nice man, a member of my church, and came highly recommended. We were having a great time, a lot of laughing going on. Then he asked just what my brain issues were. I told him FTD, then started to explain it as is usually necessary. He said, I know exactly what you have, my sister had the same thing. Then it was like he couldn't get out of our house fast enough. I was confused. My husband asked if she "has" FTD or "had." He explained that she had already passed away from it. Then it clicked. I explained to him that other family members had experienced it and that we did indeed realize what the consequences would be. He relaxed then and continued talking. He even volunteered to come over sooner to install the stairway handrail within a few days, even though he couldn't start the other work for a few weeks. Yes, he did understand what I am going through. I am thinking the frustration came from once again realizing that this disease is a death sentence. Part of me felt relieved, though, that he didn't say "You seem fine, are you sure there is anything wrong with you?"
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